Friday evening I asked Emma whether she wanted to use the laminated letter board or a qwerty, bluetooth keyboard connected to the iPad. She told me she wanted to write using the keyboard. Emma has written on the keyboard during her RPM sessions with B., but this is not something I’ve attempted. I have been reluctant to use the keyboard because Emma has done so well using the laminated letter board with me and I’m always worried about changing something that’s working well. But when using the letter board I have to transcribe as she writes or hope that I’ll remember what she’s written, whereas with the keyboard it automatically types directly onto a document within the iPad. Often I can’t remember what she’s written, or think I have remembered correctly, only to find out later I did not.

This was the case Wednesday night when Emma wrote in front of an audience at CoNGO. I hadn’t stopped to transcribe her words as she wrote them, thinking I’d be able to remember, but once she’d finished the sentence, I couldn’t remember. Afterward, when we thought we hadn’t recorded our presentation, I tried to remember what I thought she’d said – “Autism is not what parents want to hear, but I hope that will change as more people meet someone like me.” What she actually wrote, once we found the video recording, I was disconcerted to learn, was – “Autism is not what parents want to hear, but I hope that will change as more people get to know someone like me.” That is a subtle, yet significant difference. I’m so sorry Emma for getting your words wrong.

Our goal has always been for Emma to write on a keyboard and eventually be able to write with the keyboard resting on the table, so that no one need hold it. That she wrote both Friday evening and over the weekend on the keyboard is a huge leap forward and very exciting!!

So. Friday evening Richard asked Emma for permission to ask her a few questions about thinking. Now for those of you who know Richard, you will smile as you know this topic is one of his favorites. He loves nothing more than to read and discuss thinking, consciousness, dreams, reality, and anything remotely related. These are the topics Richard explores in his writing and the things he is fascinated with. Richard wrote on Emma’s Hope Book FaceBook page – I “think” of “thinking” as my constantly chattering internal dialog. I have long suspected that Emma has either NO internal dialog, or very little, and that what she “thinks” of as “thinking” must be very different from what I “think.”

Emma generously agreed to allow her dad to ask her a few questions though she did remind him that she had the timer on.

*I need to interject here that the following conversation is representative of Richard’s “thinking” and Emma’s as she describes it. No one is suggesting that ALL people, either autistic or non autistic think as either of them do. It would be a mistake to assume Richard is somehow representative of ALL non autistic people, though many may relate, or that Emma is representative of ALL Autistic people.

Richard: Mom and I have this internal dialog going on all the time and that’s what we call “thinking”. How does this differ from the way you think?

Emma: I only think in voices when I am working with you (Ariane).

Ariane: Is this also true when you write with others?

Emma: Yes.

Richard: Do you see our internal dialog as an advantage or disadvantage compared to your own way of thinking?

Emma: It is more distracting than the way I think.

Richard: Tell us more about how you think. If it’s not with an internal dialogue, what is it like?

Emma: Know that I am almost always happy and take great pleasure in sounds, color, fabric. Everything in life is beautiful if you are able to be here.

*Whoa! “Everything in life is beautiful if you are able to be here.”

Richard: I’m so used to thinking with an internal dialogue. It’s hard to imagine thinking without talking to myself.

Emma: Have you felt this always?

Richard: When I was a kid I didn’t talk to myself all the time. I was probably a lot happier. As I grew older, my internal dialog became stronger and now it’s there most of the time. I have to meditate or concentrate to temper it.

Emma: It’s too bad that you have difficulty.

Richard and I looked at each other and shook our heads in amazement. Then Emma began to laugh and we joined her.

**A brief update on Emma and Ari Ne’eman’s presentation at CoNGO last week that we video taped, thought we hadn’t then found we had. We have not had time to upload it and we haven’t received approval from Ari yet, so it may take a few more days before we can post all or part of it here. Bear with us.

“Awareness is deciding something is worth your time and attention. It is not necessarily good. Real awareness needs to be balanced.” ~ Emma Zurcher-Long

I asked Emma whether she wanted to write something about autism awareness since April 2nd is World Autism Awareness Day, designated by the UN in 1989. Emma wrote,

“Autism awareness really does me very little. It is not honoring or making my life easier. So many believe I am unintelligent even though I write well. Until they see me writing, it is not what they assume. What good is awareness if it doesn’t tell people the truth?”

Ariane: “What is the truth?”

“The truth is, so much of what we perceive compared to another, isn’t known. People see me, but don’t understand what they are seeing. I want people to know what it is like to have smart thoughts, but not be able to prove it.

“No one wants to be treated with impatience. I am happy when people are aware of how bright I am. Maybe they have a special light bulb for that. Shine some awareness on those of us who can’t talk the way we think.”

It’s taken me decades to figure out that whenever I am angry, fear is lurking. All kinds of people talk about the association between anger and fear, but it was not a thought I was able to appreciate. It’s still not the first thought I have when I am angry about something. It’s not even the second thought. In fact, I’m lucky if it’s something I can remember at all when I’m angry. Yet, if I look back on all those years when I was so very frightened of my daughter’s diagnosis and what I assumed that meant for her future, I see how linked the two were. But it was the fear that grabbed me by the throat and no matter what I did, it seemed unaffected and unwilling to let me go. It was the fear that made itself known to me; the anger was far more subtle and insidious.

“When you sense a threat your mind generates fear and anger. The fear you generate is part of a flight response from your physiology. Anger is the emotional energy you generate for the fight against that perceived threat. What can be confusing is that your mind creates fear and anger even when the threat is just imagined.” ~ Pathway to Happiness

I understood things like the above paragraph. In a calm state of mind, it made perfect sense that my anger was rooted in tremendous fear, even if imagined. What did the future hold for my daughter? How was she going to get through life? How would we be able to keep her safe? How would she fend for herself? Would she be able to fend for herself? Who would take care of her once we were gone? Fear. Fear. Fear and more fear. And then, without even realizing it, I would find myself furious. Enraged. And my rage found the perfect target. Autism. Autism was what I was furious with. Autism was what the problem was, so it stood to reason that if I could remove it, all would be well. So this is what I set out to do. Except that my daughter happened to be Autistic. But if I didn’t say it that way I could continue to separate the two. I could continue to tell myself I was fighting the autism and not her. I could continue to believe that my anger with autism would not affect her.

“Anger is the natural emotional reaction to what the mind and imagination are doing. The way to overcome anger is to change how the mind imagines stories and how much you believe them. When the mind imagines painful scenarios you naturally produce anger. To reduce and eliminate the anger it is necessary to shift the stories that the mind imagines.” ~ Pathway to Happiness, Understanding Anger

That quote more than any other sums up exactly what happened. I had to change the story that my mind was imagining. Instead of thinking – my daughter is locked inside an autistic cage that I need to find the key to free her from – I had to examine everything I thought I believed and start from scratch. I had to rethink how I viewed autism, my daughter and how the two were completely intertwined and one. I had to dissect all my preconceived ideas about autism and Autistic people and what I thought that meant. I had to be open to other ideas about it.

For me that began with reading books. First books like Representing Autism by Stuart Murray, Unstrange Minds by Roy Richard Grinker and Autism and Representation Edited by Mark Osteen and then I found blogs written by Autistic people, see the Resources page on this blog. From there I began developing relationships with Autistic adults, not just the occasional interaction, but real friendships. People I have grown to love deeply. I had to find people who were non-speaking, or spoke intermittently. I had to find people who were obviously Autistic and couldn’t “pass”, I had to spend time with those people. And what I found was that far from being miserable, these people were living their lives, doing things, had found purpose and meaning and were active in their communities. The very things I had been told could not, would not be possible for my child.

“Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and freedom.” ~ Victor Frankl, Man’s Search for Meaning

And so I found I had a choice. I could choose to continue to live in fear of autism and all that people were telling me Autism meant or I could choose to embrace my Autistic child, learn, enjoy and let go of all that anger and fear as it came up, as it continues to come up. Each time I feel fear and anger, and I do on a daily basis, I now know I have a choice. I can fall into the fear and anger or I can step back from it, realizing it’s a mirage, realizing that as painful and real as it feels it is not a fact, it is a construct of my thinking and I can sit with it and not react to it. Because my fear has me running away and my anger has me shouting, either action keeps me apart from others. I have learned that the answer to both is to do something else. And that is this – walk towards instead of away, speak lovingly instead of shouting and pushing away.

Accepting myself has been an ongoing process and it began well before I became a parent and got married. It began more than seventeen years ago when I was flailing about, bulimic, unable to stop using my substance of choice (food) the way a drug addict uses crack. I have written about this period of my life before ‘here‘, ‘here‘, ‘here‘ and ‘here‘ so I won’t go into great detail again now. Suffice it to say, I was out of control, scared, suicidal and I couldn’t stop binging and purging. And then someone who had once been an active alcoholic and obese, with more than a hundred pound maintained weight loss, said to me, “What if you accept that this is where you are?”

I remember I looked at her in shock. Even now, thinking back to her words I find I am holding my breath. It was such a stunning statement. Never had anyone suggested such a thing. To me it suggested complete defeat. It was blasphemous. It was the single most heinous suggestion I’d ever heard. I think I said something like, “Are you kidding? What do you mean?” I can no longer remember her exact words, but she said something like, “You just told me you can’t stop binging and throwing up. You just said you are out of control. You just gave me a detailed description of what you do, how completely depressed you are, how you’ve tried for twenty-two years to control yourself and yet here you are, still unable to. What if you told yourself – okay. This is where I am. I am out of control. I hate it. I hate feeling this way. I can’t stop. I can’t stop hurting myself. I can’t stop binging. I can’t stop throwing up. I can’t stop thinking about food. I can’t stop abusing myself. This is where I am. I accept that I am here. What if you did that?

I didn’t have an answer. I couldn’t think. I felt like I was being given a pop quiz I hadn’t studied for. I stared at her and then she did the next thing that I could not understand or wrap my mind around. She opened her arms in embrace and hugged me. I remember my confusion, the feeling that this couldn’t be right, that she was unhinged, that the only thing that could save me from self-destruction was more self-criticism, more self-loathing and more self-recrimination. But I also knew what she’d said made some sort of bizarre sense; for twenty-two years I’d been upping the self hate talk to no avail. All that criticism I kept dumping on myself had gotten me exactly where I was – at a dead end. So I took a deep breath, held onto her hand and took a metaphoric leap into the unknown. The unknown of acceptance.

Just in case you’re wondering, it didn’t happen as quickly or as easily as this may sound. That leap took years of practice, of gently reminding myself that whatever I was feeling, whatever I was doing, I could accept that in that moment I was where I was. It took years and years of cultivating awareness, of being able to see when I took up the whip that I could also put it down again. Kindness, compassion, gentle reminders and acceptance, this is the road I have tried to stay on. As I said, this is very much a work in progress. Some call it a ‘practice’ because ‘work’ sounds difficult. My experience with acceptance has been that it is “work”. It is not easy for me. It does not come naturally. I have stumbled along the way. I continue to wander off at times, only to be brought back, gently, kindly and with compassion by others who are on the same path. It takes gentle reminders, many nonjudgmental nudges to move back onto the path of acceptance. But I have seen the light and know to follow it even when it grows dim.

My experience with acceptance regarding autism has followed a similar trajectory. You might think – why didn’t she ‘get it’ right away? Why did it take so long for her to remember that what had worked for herself would work with this too? And the only answer I have is this – I forgot and I couldn’t see that they were connected. I didn’t see the value in accepting autism because I didn’t see my child as Autistic. I saw her as having been diagnosed with a word I feared and didn’t understand, and therefore was not going to accept. Again it felt like defeat to accept. It has only been a little over a year that I was able to make the connection. And the thing that helped me make the connection came in the form of yet another person who accepted me and all my fear, guilt and shame with compassion. Once I was able to make the connection, became aware of my lack of acceptance and allowed that to be, without adding criticism and judgement to it, was I finally able to begin the process of true acceptance.

Acceptance of ourselves and where we are in this moment opens us up to the wonder of all.

In the spirit of “Autism Awareness” month, I’ve decided to write at least a few posts this month devoted to the kind of “awareness” I would like to see more of. Awareness can be subjective and the awareness being pushed, this month in particular but, most of the time is usually not the awareness I wish I had been given when my daughter was diagnosed almost nine years ago. I believe awareness should help us, not make things more difficult. In the best case scenario, awareness gives us options and makes us feel empowered to make better decisions. Awareness is the opposite of ignorance, yet more often than not, when it comes to autism, so-called “awareness” becomes an abettor to ignorance. This is not as it should be. Awareness, in its true form, is a good thing, even if not easy, even if becoming aware is painful, even if awareness makes us uncomfortable, it (hopefully) leads us to act in a more thoughtful manner.

E., whose blog The Third Glance, is someone I urge everyone to follow. I first became aware of E.’s blog shortly after I found Julia Bascom’s blog Just Stimming. So within a 48 hour period I read Julia’s blog and then found E.’s blog and read My Cat is My Hero, Executive Function and Words, which describes in beautiful detail the pitfalls and distractions of having a conversation with a group of people. Growing Up Autistic where she writes, “Anything related to my Autism was punishable, regardless of the actual magnitude or relevance of the offense.” A little farther along she writes, “I am Autistic. I was abused for it. My whole person was trained to be invisible and I was taught that I didn’t matter.”

I read E.’s blog and I learned and my awareness increased and I started to see how things I’d been told, things I’d been made “aware” of were actually incorrect. E.’s blog was the kind of awareness I needed. It was the kind of awareness that helped me make different decisions. This was the sort of awareness that helped me understand, helped me take more informed actions, helped me seek out more information. Isn’t that what “awareness is really all about? Isn’t awareness suppose to be about gaining knowledge? I want knowledge. I don’t want knowledge disguised as fear.

It’s interesting to note that the word awareness, when paired with the verb “to be” as in – be aware, is easily visualized and thought of as, “beware” which dramatically changes the meaning. It no longer is a word of benign information, but instead is a word of caution and fear. I do not think this is a mistake. I know it’s cynical of me, but I think Autism Speaks, the single largest organization involved in Autism and the creator of the “Autism Awareness” campaign, chose their wording carefully. I’d like to think I’m giving them more credit than they deserve, but for a company that spends more on PR than they do on actually helping families and those who are Autistic, I don’t believe I am.

My awareness of autism has dramatically changed over the years. It has changed because of the information I’ve found and been given. In the beginning, my information came from books, autism organizations, various professionals, a couple of neurologists, our pediatrician; surprisingly the more “credentialed” the person was, the more likely they were to admit how little they actually knew about autism. In retrospect this was my first real lesson in awareness – beware of organizations and those who believe they “know” all about autism, whether that is the cause or which specific methodologies, treatments or therapies your child will be best served by, because they do not know, despite how vehemently and persuasively they may speak.

As time went on, I became increasingly aware of my own misery. The common misery supposedly shared by us parents, dominated the conversations surrounding autism. I became fixated on the “fact” that autism was the cause of my misery and set about removing it from all our lives. This is where awareness took me. This was what I knew and understood. But this is not the sort of awareness I want to be a part of. This is not the kind of information I wish I’d gotten, nor is it the information I hope other parents and families will receive. Those first few months after receiving the diagnosis are critical. How we talk about autism and by extension our Autistic child changes all that we then do and where we focus our energies.

Autism did not cause me to be miserable. I was concerned and I was scared, but my daughter’s neurology was factually not what frightened me, it was what I was being told about her neurology that terrified me. Had someone said to me when we were still trying to get her out of diapers when she was seven years old – “it’s going to be okay, here are a couple of different things you can try, but remember most people do get out of diapers, eventually” I would have felt a little calmer. Had someone said to us when our daughter was six years old, “read to her age appropriate material, teach her age appropriate lessons” I might have felt confused, I might have had a great many questions, but I wouldn’t have felt the fear I felt when we were informed she could not possibly be placed in a school with her same age peers. Had someone said to us when we first received her diagnosis, “presume competence, she can and will learn, but she will learn at a different pace, she will learn differently than you might expect” I might have felt concern, but I would not have felt the kind of despair I felt when I questioned whether she was capable of learning at all.

If we want to have more awareness about Autism then let’s have it come from those who are actually Autistic. Because if you are like me, these are the people who will change your views and shift your mind away from the “tragic” to the far more helpful information that might actually help you help your child. The kind of information that opened our minds to different forms of communicating, different ways of learning, all those things that have actually aided us in helping our daughter. Our judgments about her neurology and all it meant to us and her, did not help us do anything but feel more fearful and miserable.

Below is a small list of people I know and am in touch with. I’ve provided a link to their blog, book(s) or film to each of their names. I will feature more people who have helped me in my growing awareness during this month of April. I’ve separated those who can speak, but depending on the circumstances lose speech, with those who mostly do not speak, but ALL communicate. Want to become aware? Read their words.